Health–illness transition among persons using advanced medical technology at home

Scand J Caring Sci; 2011; 25; 253–261
Health–illness transition among persons using advanced medical technology at home This study aimed to elucidate meanings of health–illness transition experiences among adult persons using advanced medical technology at home. As an increasing number of persons perform self‐care while using different sorts of advanced medical technology at home, knowledge about health–illness transition experiences in this situation may be useful to caregivers in supporting these patients. A qualitative design was used. Five women and five men, all of whom performed self‐care at home, either using long‐term oxygen therapy from a ventilator or oxygen cylinder, or performing peritoneal or haemodialysis, were interviewed. Ethics committee approval was obtained. Informed consent was received from all participants, and ethical issues concerning their rights in research were raised. The interviews were analysed using a phenomenological hermeneutical methodology, including both an inductive and a deductive structural analysis. This method offers possibilities to obtain an increased understanding by uncovering a deeper meaning of lived experiences through interviews transcribed as texts. The health–illness transition for adult persons in this context was found to mean a learning process of accepting, managing, adjusting and improving daily life with technology, facilitated by realizing the gain from technology at home. Further, the meaning of the health–illness transition experience was interpreted as contentment with being part of the active and conscious process towards transcending into a new state of living, in which the individual and the technology were in tune. The healthy transition experience was characterized by human growth and becoming. This study elucidates one meaning of health–illness transition experiences in relation to the use of advanced medical technology on a more generic level, independent of the specific type of technology used. A positive attitude towards technology at home facilitates the transition.     

Living with an adult family member using advanced medical technology at home

Living with an adult family member using advanced medical technology at home An increased number of chronically ill adults perform self-care while using different sorts of advanced medical technology at home. This hermeneutical study aimed to gain a deeper understanding of the meaning of living with an adult family member using advanced medical technology at home. Eleven next of kin to adults performing self-care at home, either using long-term oxygen from a cylinder or ventilator, or performing peritoneal or haemodialysis, were interviewed. The qualitative interviews were analysed using a Gadamerian methodology. The main interpretation explained the meaning as rhythmical patterns of connectedness versus separation, and of sorrow versus reconciliation. Dependence on others was shown in the need for support from healthcare professionals and significant others. In conclusion, next of kin took considerable responsibility for dependent-care. All next of kin were positive to the idea of bringing the technology home, even though their own needs receded into the background, while focusing on the best for the patient. The results were discussed in relation to dependent-care and transition, which may have an influence on the self-care of next of kin and patients. The study revealed a need for further nursing attention to next of kin in this context.     

The everlasting trial of strength and patience': transitions in home care nursing as narrated by patients and family members

The aim of this study was to describe and interpret patients' and their family members' lived experiences of caring at home. Twelve tape-recorded narratives, with seven patients and five family members, were interpreted in accordance with a phenomenological-hermeneutic method inspired by Ricoeur. The findings revealed life situations where natural caring was changed into patient-care-giver relations and the home became a public room. The patients had to deal with decreased abilities and the family members with adjusting to caring needs. The changes in the life situations were interpreted as long lasting and trying transitions. Implications for nursing and further research are proposed.     

Assenting to exposedness – meanings of receiving assisted bodily care in a nursing home as narrated by older persons

Most older persons moving to a nursing home need to receive assisted bodily care, which means being in a position of vulnerability. However, few studies have explicitly focused on the meanings of receiving assisted bodily care from the older persons’ perspective. This study aimed to elucidate meanings of receiving assisted bodily care, as narrated by older persons living in a nursing home. Twelve men and women, aged 80 or older, living in a Swedish nursing home, participated in the study. Data were generated by narrative interviews and analysed with a phenomenological‐hermeneutical method. The regional ethics committee approved the study. In the analysis, one main theme emerged: ‘Assenting to exposedness’. This theme comprised five themes, ‘To have hope in hopelessness’, ‘To relinquish one's body into others’ hands’, ‘To be between power and powerlessness’, ‘To oscillate between one's own responsibility and demands’, ‘To be in an ongoing interaction’, and ten subthemes. In conclusion, receiving assisted bodily care means to be exposed, but not passively. Rather, it means to be self‐determinant for as long as possible, to perceive the body as lived. When the body must be relinquished to others, it might be objectified, leading to care‐suffering. To avoid this, the older persons use a certain competence, acquired through life, to decide when to take action or when to assent. However, this is but one of the several possible interpretations, which may be considered a limitation.     

General practitioners’ reasoning about using mobile distance‐spanning technology in home care and in nursing home care

Scand J Caring Sci; 2011; 25; 117–125
General practitioners’ reasoning about using mobile distance‐spanning technology in home care and in nursing home care The trend for health care and nursing care turns from hospital to health care and nursing care at home. Studies have shown that health care professionals have no access to patient records in home and nursing home settings. Technological development creates opportunities for a host of mobile technology solutions. The aim of this study was to describe the reasoning among general practitioners (GPs) about the use of mobile distance‐spanning technology (MDST) in care at home and in nursing homes. Seventeen GPs were divided in five groups for a group interview. The interviews were tape‐recorded and transcribed verbatim. The qualitative content analysis resulted in four areas about the MDST, MDST has an impact on GPs’ work, the nurses’ profession, and the patient and the family, with nine adherent categories. The findings were interpreted and formulated in the theme: MDST should be used with caution. The results show quite a few expressions about the MDST as useful and valuable in health care at home and in nursing home settings; however, in every category, there were text that we interpreted as caution when using the MDST. The MDST cannot be used in all situations and cannot replace human meetings in health care and nursing care at home and in nursing homes. The MDST should primarily be a tool for the profession, and understanding the professions’ reasoning about technology use in health care at home and in nursing home settings must be the base for implementing MDST.     

Needs for end‐of‐life care by home care nurses among non‐cancer patients in Korea and Japan

The purpose of this study was to undertake a comprehensive assessment of each stage of the end‐of‐life process and the home care nursing needs of non‐cancer patients. The total number of eligible patients was 117 in Korea and 121 in Japan, aged ≥ 40, receiving continuous home care nursing throughout the beginning, stable, and at final death stages and ultimately dying at home. The need for the ‘management of physical symptoms’ increased as patients progressed through the end‐of‐life stages to death. In both countries, the needs for ‘loss and grief care’ and ‘coordination among care team members’ were significantly higher in the stable stage than in the beginning or final death stages. Further research is needed to develop tailored nursing care programmes that meet the specific needs of patients in each stage of the end‐of‐life care at home.     

‘I feel like a salesperson’: the effect of multiple‐source care funding on the experiences and views of nursing home nurses in England

The difficulties faced in the recruitment and retention of nursing staff in nursing homes for older people are an international challenge. It is therefore essential that the causes of nurses’ reluctance to work in these settings are determined. This paper considers the influence that multiple‐source care funding issues have on nursing home nurses’ experiences and views regarding the practice and appeal of the role. The methodology for this study was hermeneutic phenomenology. Thirteen nurses from seven nursing homes in the North East of England were interviewed in a sequence of up to five interviews and data were analysed using a literary analysis method. Findings indicate that participants are uncomfortable with the business aspects that funding issues bring to their role. The primary difficulties faced are: tensions between care issues and funding issues; challenges associated with ‘selling beds’; and coping with self‐funding residents’ changing expectations of care. The findings of the study suggest that multiple‐source care funding systems that operate in nursing homes for older people pose challenges to nursing home nurses. Some of these challenges may impact on their recruitment and retention.     

Caring in residential aged‐care. Qualitative findings from an e‐cohort sub‐study

Aim. The aim of this e‐cohort sub‐study was to explore and describe nurses’ understandings of ‘caring’ in residential aged‐care. Background. The quality of the work environment is an important issue for recruitment, retention and workforce planning. Knowledge about the people in and the place that is the residential aged‐care facility may assist with the problems surrounding the recruitment and retention of nurses in the workforce. Design. Qualitative electronic cohort sub‐study. Methods. This paper presents the qualitative research findings from an electronic cohort sub‐study of 58 registered and enrolled nurses working in the residential aged‐care sector in 2007. Data were collected through an open ended question and a qualitative content analysis was used to generate the core categories. Results. The concept of caring was grounded in and constrained by, the everyday reality of the nurses in the study. Organisational imperatives for the completion of documentation necessary for accreditation and funding combined with under‐staffing restricted the time available for caring practices. Some nurses represented residential care faculties as devoid of care, others as a place where the resident was central to their work and care. The staff perceived of themselves as an ageing workforce in need of rejuvenation and resourcing. Conclusion. The concept of caring is manifest in nurses’ language as they describe their workplace, the residents, themselves and the structures that impact on what they do. Good caring manifests itself when the residents are central to the business of the aged care facility. However, nurses in this study describe a range of restrictive factors impeding caring practices and diminishing workforce morale and motivation to create environments that can truly be called a ‘home‐away‐from‐home’ and one that all people would find acceptable. Relevance to clinical practice. These findings have implications for aged‐care sector recruitment, retention and workforce planning within residential aged‐care facilities.     

Validation of CARE‐Q in residential aged‐care: rating of importance of caring behaviours from an e‐cohort sub‐study

Aim and objective. To validate the Caring Assessment Report Evaluation Q‐sort questionnaire in the residential aged‐care setting. Based on this determination, to conclude with what degree of confidence the questionnaire can be used to determine the ranking of the importance of caring behaviours amongst aged‐care nurses and residents in residential aged‐care. Background. Perceptions of caring may be context specific. Caring in residential aged‐care may stand in contrast to the sense of caring understood and practiced in other settings. Design. Self‐administered survey. Methods. Residents from three not‐for‐profit aged‐care facilities, across both high‐care (nursing‐home) and low‐care (hostel care) were surveyed relying on the Caring Assessment Report Evaluation Q‐sort questionnaire. A sub‐sample of registered and enrolled nurses working in residential aged‐care and registered with the Nurses & Midwives e‐cohort study completed the same survey. Results. Although the Caring Assessment Report Evaluation Q‐sort questionnaire showed good internal consistency for the sample of nurses, the results for the residents were more erratic. Both groups displayed large ranges for the inter‐item correlations. The results of the Mann–Whitney U‐test indicated that the nurses rated the Comforts, Anticipates and Trusting relationship as significantly more important than the residents. Both groups rated the Explains and facilitates subscale as least important. All subscales, however, received median scores greater than, or equal to, six (seven‐point, Likert scale) indicating that all were considered important overall. Conclusion. Based on poor Cronbach's alpha coefficients, negative inter‐item correlations and qualitative observations, without further development within the residential aged‐care facility the free response format version of the Caring Assessment Report Evaluation Q‐sort may not be an appropriate measure to use with residential aged‐care residents. More research needs to be conducted into how residents and nurses are interpreting the items in the Caring Assessment Report Evaluation Q‐sort. Relevance to clinical practice. There will always remain a need for nurses to enact behaviours that are meaningful to residents (and patients generally).     

Utilization of medical healthcare among people receiving long‐term care at home or in special accommodation

Scand J Caring Sci; 2010; 24; 404–413
Utilization of medical healthcare among people receiving long‐term care at home or in special accommodation Aim: To investigate the utilization of medical healthcare, hospital care and outpatient care, during a 1‐year period in relation to informal care, multimorbidity, functional status and health complaints and to long‐term care at home or in special accommodation among people aged 65+, with one or more hospital admissions and receiving long‐term care. Method: A total of 694 people receiving long‐term care during the year 2001 were studied. Data were collected by means of the administrative registers Patient Administrative Support in Skåne and PrivaStat and through the study Good Ageing in Skåne. Those at home and those in special accommodation were compared regarding utilization of medical healthcare, informal care, multimorbidity, functional status and health complaints. Multiple logistic regression analysis was performed using at home vs. in special accommodation as the dependent variable and also two multiple linear regression analyses using the number of hospital stays and the number of contacts with the physician in outpatient care separately as dependent variables. Findings: Those at home were significantly younger (mean age: 81 vs. 84 years) and less dependent in personal and instrumental activities of daily living (PADL/IADL) than those in special accommodation. A larger proportion of those at home was admitted to hospital three times or more (21 vs. 14%) and they had significantly more contacts with physicians in outpatient care (md: 10 vs. md: 7). Informal care was associated with care at home (OR = 0.074) and with utilization of outpatient care (B = 2.045). Dependency in PADL was associated with care in special accommodation (OR = 1.375) and with utilization of hospital care (B = ?0.060) and outpatient care (B = ?0.581). Conclusion: Medical healthcare seems more accessible to those who live at home are younger, less dependent and who have access to informal caregivers.     

Being in a standstill‐of‐life: women's experience of being diagnosed with systemic lupus erythematosus: a hermeneutic‐phenomenological study

Systemic lupus erythematosus (SLE ) is a highly unpredictable and potentially lethal disease which ultimately challenges identity, future and the meaning of life. In a caring context, the experience of good health is perceived to be a balance between biomedical health and the existential experience of having a good life. This balance is jeopardised in the face of severe chronic illness and leads to extensive suffering if not handled carefully. Research suggests that patients suffering from severe chronic illness need support on an existential level, but also emphasises that, given its elusive nature, caring for the existential dimension is difficult to manage. This paper explores the experience of being diagnosed with SLE as an existential phenomenon. Through repeated phenomenological and hermeneutic interviews with 15 women conducted from 2013 to 2015, data concerning the diagnostic phase of SLE were analysed using Van Manen's phenomenology of practice. The essence was found to be a standstill in life comprehended through three inter‐related themes: standing in a swirl of events, standing on uneven ground and standing at a turning point with oneself and others. The paper elucidates how existential life phenomena are lived, during the course of being diagnosed. In conclusion, it provides an ethical awareness of how a standstill in life is lived and of the patients’ existential transition during the diagnostic phase. A holistic approach is recommended in caring for patients with SLE .